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cherrypie

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Posts: 51
Reply with quote  #16 
I have just got back from my appointment with the Urologist who told me that as all other things have been ruled out he thinks that I am suffering from PBS and has referred me on to another Urologist who specialises with the condition. He suggested either botox or cystistat treatment but that there is a problem with funding. I suspect that this means that waiting lists are long and that I will be plodding on as I am for some time to come! I am trying to come to terms with what all this could mean. My biggest fear at the moment is that I am unable to work, I have been off sick for a couple of months now and unless there is a considerable improve soon I wonder when a return to work will prove posdible.
LornaLee

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Posts: 10
Reply with quote  #17 
At least you know what is going on now, and can look into the best forms of treatment. Best to wait until you see the new urologist first, just try to stay positive, believe me, I know it's not easy. You're moving in the right direction, which is what is important.

I just received the results of my hormone blood test, turns out I have high prolactin and low estrogen, so I need to get an MRI done, the day before I'm leaving the country, so quite a close call! I asked if this could be related to my urinary issues, and I was told no, however I am not convinced. I wasn't speaking to my urologist, but another doctor instead. I'm just waiting for my urologist to get back from his lunch break so I can call him about this and my scheduled cystoscopy. Certainly glad I had my hormones checked now, will solve a lot of other issues I've been having.
LornaLee

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Posts: 10
Reply with quote  #18 
I've finally received my hormone test results today, to which I was told that my prolactin levels are pretty darn high, while my estrogen levels are very low. This is the reason I have had problems with my period (unless I take medications, I don't get one), so now I have an MRI scheduled to confirm the cause of it.

I asked the doctor if this could be linked with what is happening with my urinary problems, and she said no, however I've read enough myself online to see there is a link between low estrogen levels and IC. I will need to discuss this with my urologist, though not sure if he's going to be any wiser on the matter.
Moderatorsusan

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Reply with quote  #19 
This needs to be investigated further given those results as low oestrogen can cause significant bladder issues. The COB office have details of a specialist yiu can see in the UK treating ladies with hormone issues. You would need to see her in person first and after that follow ups can be done vial the phone.
Whyme

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Posts: 19
Reply with quote  #20 
Hi All,

I can relate to so much of what has been said here - from getting no coherent diagnosis to the confusion of different diagnosis, many doctors and specialists, negative samples, suffering many of the symptoms described here.....and feeling like I'm going crazy when noone listens or understands how you feel!

What I want to comment on is the hormone connection - I too feel that I have an underlying hormone problem but have found it difficult to get my GP to agree and refer me. (A last visit led to him suggesting I see a psychotherapist to deal with all my ailments!!!) But am finally seeing an endocrinologist tomorrow, I am not hoping for a miracle but it is an avenue I defiantly need to explore at this stage.  I have had IC for over two years now and am on longterm antibiotics for the past few months under the Prof. While IC symptoms have improved slightly I have other symptoms that I need to get to the root of.

Fingers crossed the endocrinologist will not dismiss me but be willing to look into my symptoms - will post if I get any insights!


Sachbash

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Posts: 2
Reply with quote  #21 
Please tell me you
Still use this website. I have the same issues been happening since September. I’ve had medications even surgery no results. Please advise !!!
LornaLee

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Posts: 10
Reply with quote  #22 
Quote:
Originally Posted by Sachbash
Please tell me you
Still use this website. I have the same issues been happening since September. I’ve had medications even surgery no results. Please advise !!!


Hi there, I now no longer have the issues. I am on the medication Vesicare which has done wonders for me. 
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